Hi everyone and welcome, welcome back. Today I am having a wonderful conversation with someone I’ve been looking forward to talking with for a while. And that is because she’s a mental health expert in the field of endometriosis, along with other things. So welcome Casey.

Casey Berna, LCSWA (00:26)

Thank you so much for having me. I’m a big fan of yours and I’m so grateful to be on this podcast and just so grateful for all that you’re doing for our community in terms of education and awareness and support.

Dr. Ginger Garner PT, DPT (00:41)

thank you. So listeners, this is Casey Berna. She is a licensed clinical social worker and a patient advocate with 15 years of experience. So I wanted to give you guys a little bit of a background before we just jumped straight into the interview. But the experience of supporting endometriosis, chronic illness, and infertility communities is a priority for Casey. And that was inspired by her own health journey.

She provides therapy for patients in both Florida and North Carolina, virtually and in-person. And we happen to be like, this is a rare interview where we’re in the same state.

Casey Berna, LCSWA (01:19)

Yes, both North Carolinians! It’s very exciting!

Dr. Ginger Garner PT, DPT (01:21)

I know, I

know, that’s like a rare thing. People are like all over the place. But Casey does run nationwide virtual support workshops, works with nonprofits and works to amplify marginalized voices in gynecological health through her role on the founding board of GynoQueer. Her documentary, I didn’t know about that, so I’m excited. I wanna hear about that.

Her documentary, EndoTruths, was featured in the Unmentionables Film Festival, and she served as associate producer on Shannon Cohn’s Below the Belt, who we all know and love. Casey’s upcoming book, Endometriosis, From Harm to Hope, will be released in Endo-month, Endo Awareness Month, March 2026. So welcome again, and thank you for being here.

Casey Berna, LCSWA (02:17)

Absolutely, thank you for having me. I’m really grateful for the opportunity to talk about endometriosis and mental health.

Dr. Ginger Garner PT, DPT (02:24)

Yeah. Okay, so I am itching to know because I did not know this, that you were working on a book. So I have to know about you. Tell us about your book first.

Casey Berna, LCSWA (02:36)

It is a labor of love for sure. I’m really grateful for the opportunity. I sort of put it out there in the universe last year, actually at the endometriosis summit I was presenting and kind of put it out there in the universe that I was going to write a book on endometriosis and mental health. And I was so grateful that Sheldon Press had contacted me.

and encouraged me to hand in an outline and submit a proposal and they accepted it. So I’ve just been working away it is due in March. So it’s crunch time. I’m about halfway through. And just really grateful and excited for the opportunity to really write a book about endometriosis and mental health and all that goes along with it.

Dr. Ginger Garner PT, DPT (03:17)

yeah.

That’s amazing. is wonderful on a couple of levels. One, I definitely understand the labor of love aspect of writing a book with the two behind me on the shelf back here of medical textbooks. Those is such an undertaking. So congratulations first on doing that because that alone is huge. And then second is that a publisher is supporting

the need for more information, awareness, and advocacy on endometriosis. So those two things are both huge.

Casey Berna, LCSWA (04:07)

Yes, I’m so grateful and you understand, know, as patients ourselves too, I feel like we struggle with what a lot of other patients struggle with at times in terms of our own energy level and our own comorbidities and chronic health issues. So I remember before submitting the outline, reaching out to other folks in the endometriosis community who have written books and

their reaction to me was, listen, I’m here for you. Like, I’m excited, but I’m here for you. If you need anything, I’m here for you. And I was like, well, thank you, but that’s kind of ominous. And now that I’m in the thick of it, I’m like, yes, okay, I understand now.

Dr. Ginger Garner PT, DPT (04:50)

Yeah.

Right, I have a meme I’m gonna text you after this and you’ll know exactly what I’m talking about because I kept it on my desktop and still refer back to it and it’s about the creativity process. So.

Casey Berna, LCSWA (05:05)

I look forward to that.

Dr. Ginger Garner PT, DPT (05:06)

Yeah.

The first question that I have is about advocacy and awareness, which I think is my most favorite topic other than medical gaslighting itself and ending that because if we don’t do that, then we can’t end medical gaslighting. So as an advocate, as a person navigating your own journey as a clinician, how do you approach addressing

the mental health challenges that are often overlooked. I mean, we think of the obvious comorbidities like anxiety and depression that can come along with it, but we also, think looking from the outside in, if you haven’t experienced it, people may not understand that there’s a lot of misdiagnosis perhaps of mental health things going on when in fact there’s this underlying endo. So in patients who are generally overlooked with endometriosis,

How do you approach addressing this?

Casey Berna, LCSWA (06:08)

who, you know what I really love about social work and why it’s unique to mental health is that there’s not only the clinical perspective of social work in terms of treating folks with anxiety and depression and really the more classic mental health issues that do come along with endometriosis. But what I also love about social work is that it does…

tackle advocacy and sort of like the macro issues that are impacting patients that are really contributing a lot to the mental health challenges that folks are having. And I saw that you had Heather Guidone on to talk about advocacy as well. And she has been an incredible mentor to not only me, but so many other advocates in this space. And what I realized is it almost seems unethical

Dr. Ginger Garner PT, DPT (06:50)

Yeah.

Casey Berna, LCSWA (07:02)

for me to try and help patients with their anxiety or depression without trying to be a part of the solution of changing, helping, supporting other folks who are trying to change and help the systemic issues that are causing injustice, that are causing mental and physical harm to folks. for me, advocacy has been a crucial part in

really helping, being a part of the solution to help change the mental health of patients in this space.

Dr. Ginger Garner PT, DPT (07:44)

I like the way that you put it so like, you just said it point, you know, just like stark, right? Being very frank in saying it would be unethical not to address being part of the solution at the same time that you’re treating it. And if I think back to the stories of my patients that I have had, my patients with endo and my own journey.

and all of the women who have become advocates, who I’m interviewing this season on the podcast, who also have endo, but have become these powerhouse champions for change. It’s that the medical gaslighting is so intertwined, the institutional betrayal of if you’ve had to doctor shop five, seven different physicians, your trust,

is like ticking down, you know, the entire time. That is a very unique situation. It is unique to women’s health. But when we look at the amount of like the budget, for example, if you look at NIH budget, which is like what 41.7 million, wait, billion, I think, dollars, and you look at the amount that Endo was given in 2022, which was like 16.

million, right? It’s 0.038 % of the budget, which is $2 per patient. But if you look at something like Crohn’s disease and the budget that it has, they get $130 per patient. We get two. So we’re facing a very unique situation where the mental health challenges, I think this is probably one of the most important topics and interviews that we’ll do.

in this season is because the mental health challenges are enormous that comes along with endometriosis. You could, you know, I don’t want to, maybe I should be bold and just say, how often does it, based on the budget alone and how we don’t even have enough research and care and a lot of the papers that are out there are wrong. They’re still conflating ablation with excision and things like that. That it might be one of the most profound

impacts in terms of gaps in research, in terms of the gender gap in research, in terms of it being like Shannon Cohn likes to refer to it as a social justice issue.

Casey Berna, LCSWA (10:17)

And gaslighting is emotional abuse. Gaslighting is emotional abuse. you know whether providers are intentionally gaslighting. don’t believe providers are intentionally gaslighting patients, right? But it doesn’t mean they’re not gaslighting patients. It doesn’t mean that because of a lack of awareness that our

well-meaning friends and family aren’t gaslighting patients, our jobs aren’t gaslighting patients. Just so many of the systems around us are not built to support us. They’re actually harming us. So there is a prolonged emotional abuse that patients have to endure and withstand.

before they get the help, support, validation that they so desperately need.

Dr. Ginger Garner PT, DPT (11:17)

Yeah, I think I want to pull out a thread of one of the things that you said because I believe it’s not much of a stretch for any woman or any person listening really to understand how women are gaslit for general medical care. The stats are stark and overwhelming and we, know, the whole, in terms of US care, we should be completely ashamed of ourselves for how we treat women in healthcare. However, then you take it a step further, right?

and you talk about if your own health care provider, whether or not they’re intentionally gaslighting you, the end result is the same.

What about the lack of understanding, as you mentioned, with your own family members and support systems, which is important. If you’re being gaslit because endo fatigue or any of the things, endo belly, GI issues, that kind of thing that people don’t understand within your own family, what are those psychological effects of being dismissed by not just healthcare providers, but within your own family and at work also?

Casey Berna, LCSWA (12:29)

It’s absolutely devastating. And I think there are so many different challenges that patients face in terms of, mean, ACOG has the wrong definition of endometriosis on its website, right? And it lays out a standard of care that providers follow. So patients go in with a family member to their provider and the provider is like, well.

Dr. Ginger Garner PT, DPT (12:41)

Mm. Mm. Mm-hmm.

Casey Berna, LCSWA (12:53)

I did an ablation, you should be feeling better, or I gave you a hysterectomy, you should be feeling better, or there’s nothing on your ultrasound. We’ve done all these tests, there’s nothing going on. So really, no one has the patience back. I feel like the system makes it easy for everyone to dismiss us and…

Dr. Ginger Garner PT, DPT (13:00)

Yeah.

Casey Berna, LCSWA (13:21)

and invalidate, like, how we’re feeling.

Dr. Ginger Garner PT, DPT (13:24)

Yeah, so I mean I know as a Endo warrior

myself, I can feel back to what that did feel like when I’m sitting in the ED telling them as soon as I go in what I think that I know it already is, but I have to check the boxes for catastrophic failure of other organs first, right? And then to have to tell them, look, I’m not pain med seeking.

and your diagnostic tests are not going to rule this out and this is what I’m gonna do next and please do not gaslight me. To have to go in and say all those things to a provider and then hope that they actually don’t label you as whatever they wanna label you in the chart is terrifying with the healthcare degree and with the license and all this stuff.

I have so much empathy and compassion for women who go in completely trusting that system, knowing that ablation is not the gold standard, that multiple papers, I was reading two endometriosis papers today, they both got the definition wrong and they conflated excision with ablation. They just put them all slash ablation slash excision slash has the same repeat, know, surgical

know, risk kind of thing. So for those women, just want to, for those of you, you know, listening, I want to speak to you directly and say, I just, we just want to validate that experience. That if our healthcare system doesn’t even yet understand how to send you and refer you to the right people for expert excision surgery.

then the likelihood of you getting medically gaslit is nearly guaranteed. It’s nearly 100 % when you go into your providers. And how does that sit with us? And so then I go back to you, Casey, and I go, OK, if we are going to be medically gaslit, and continuously so, until we get enough, until we make enough noise, until we stay angry long enough and make enough noise, how do we

live with endometriosis, undiagnosed or diagnosed. I don’t know that it changes because I will still talk to well-meaning colleagues, colleagues that I know and that know that I have endo and they still don’t understand what it is. Then how do you go about addressing and identifying those particular psychological effects?

and then saying, okay, in a trauma-informed way, with this chronic persistent illness or pain that they have, undiagnosed or not diagnosed endo, what’s some of the first steps that you take?

Casey Berna, LCSWA (16:28)

I know when a patient comes into my office, they’re often feeling incredibly anxious, incredibly depressed. They’re feeling truly like very hopeless because they often have gone to multiple, multiple providers and have been gaslit and haven’t been able to connect with the resources that they need.

So for me as a provider, the first step is pretty simple. It’s just to listen, to hold space, to validate their feelings, to let them know that they’re not crazy. It’s not in their head that I’m not a medical doctor, but it sounds like it’s worth checking out that there is still endometriosis or there is possibly endometriosis.

providing them with education and resources, connecting them to community. we talk about being gas-lit and being dismissed. And often for African-American women, it is so much worse. They’re dismissed at higher rates. They’re undertreated for pain at higher rates.

you know, for the LGBTQIA community, it could feel even more precarious, right, going in, and they’re also feeling more dismissed by providers. So especially for more marginalized folks, connecting them with communities like Endo Black or like Gyno Queer. For me, I often refer them to…

There’s a bunch of virtual support groups throughout the country, just getting them in community so that they feel connected. They start to educate themselves. They start to feel empowered and also start to process and grieve the experience of being gaslit, the experience of feeling dismissed and process really just how sick their body probably is and how

real it is and growing in a lot of self-compassion as well.

Dr. Ginger Garner PT, DPT (18:45)

Yeah. Okay. So you said two words that really stick out to me because one of the reasons that we have these conversations and it’s making me think, I want an entire season on mental health. So stay tuned. We might have Casey back for part two on this because this is so important is processing. You said processing. And you also mentioned marginalized groups.

another group, have an interview coming up with, and I can’t remember names of all of our people we’re interviewing, so bear with me for just a second, but the Latina community as well, because then you have dual issues. If you are a part of the LGBTQ and Latina community, I can’t even begin to feel how much of a

Casey Berna, LCSWA (19:30)

Yes!

Dr. Ginger Garner PT, DPT (19:44)

weight and burden that they’re carrying with that. And so when we talk about marginalized communities and all of us too, processing these things, what are some of the better fit or evidence informed, best evidence, however you want to phrase it, means in which you are helping people through?

processing it because I know there are many different ways and not one kind of jives or resonates with everyone. Things like EMDR or whatever it may be. So what are some of the tools that you have found to help people process that grief and that trauma because we can’t just leave it behind and say, whoops, all right, yep, I’ve got endo and yep, I was gaslit. All right, I’m going back to work, right? It’s like, if only it was that easy.

Casey Berna, LCSWA (20:36)

Absolutely. So there are different modalities that I think are incredibly helpful for folks. really feel like in the beginning, when I first see a patient, I do a lot of crisis management with that patient. And I always say having extensive endometriosis throughout your body and feeling all of those symptoms and all of that pain.

Dr. Ginger Garner PT, DPT (20:49)

Mm.

Casey Berna, LCSWA (21:03)

It’s like your house is on fire. And that’s sort of the metaphor I use. it’s, everything is difficult. Everything feels scary, overwhelming. You feel sort of like trapped in your own body at times. So the first step is really helping patients feel like they’re out of crisis. And that often

Dr. Ginger Garner PT, DPT (21:06)

Yeah.

Casey Berna, LCSWA (21:31)

can be done with just giving them more resources, connecting them with a multidisciplinary team and start educating patients so that they have a better understanding of what is potentially going on. And then once you sort of get through that, helping them once they get a diagnosis or go through treatment or say have surgery, that’s when a lot of the

grief work starts and really processing grief. And there’s different modalities, cognitive behavioral therapy. There are a lot of aspects of that solution focused therapy. I as a social worker, I do a strength based approach, because often an endometriosis can have such a big impact on our self esteem and our self worth, and just sort of re

Dr. Ginger Garner PT, DPT (22:06)

Mm-hmm.

Casey Berna, LCSWA (22:26)

focusing that on we do have strengths, even though we do have challenges. And then often for medical trauma to EMDR can be really helpful. I’m not trained in EMDR, but sometimes for folks who really are specifically connected with trauma or PTSD or

EMDR can be really helpful to help process that. And because a lot of times to

The big feelings we’re feeling, also we can feel it within our body. So connecting, say, anxiety or depression to where we’re feeling it in our body can also be really helpful as well.

Dr. Ginger Garner PT, DPT (23:09)

Mm-hmm.

Yeah, yeah, I found that really important in physical therapy is that whole somatic experience of knowing that if they’re feeling pain, and this is so relevant for endometriosis, is…

Is it related to the psychological and or emotional things that they’re feeling that is creating that physical pain? Because it goes beyond, there’s a lesion in that region or there’s an adhesion there. Because if we just ask ourselves, even without endometriosis, where do you manifest stress? Well, everybody’s going to have a physical manifestation of stress somewhere. Some people feel it, not…

in their head or neck, it’s in their legs or their feet or, you know, they hold one shoulder up weird or whatever it is. So I think that, you know, for the listeners, if you aren’t yet connected to where you feel that stress in your body, and then when you have a medical condition like endo, where does it go there? That is such an important first step because in working your way through processing pain, that’s like a key.

of being able to self-manage that instead of feeling like you’re getting swallowed up by pain on a regular basis.

Casey Berna, LCSWA (24:37)

Yes,

anxiety often comes with pain. So what I often work through with folks is say sometimes when folks are getting their period like day one and they’re in a lot of pain or vomiting happens, right? Like they’ll spend an hour vomiting. The anticipatory anxiety leading up to that, actually in

Dr. Ginger Garner PT, DPT (24:55)

Mm-hmm.

Casey Berna, LCSWA (25:05)

The documentary I did, one patient said it so peripherally, she said, waiting for my period feels like I’m waiting to get murdered every month. And just that visceral fear. So what I often do with folks is ask them on a scale from like one to 10 where their anxiety is. And often their anxiety is at a nine or 10. And then I’m like, okay, your anxiety was at a nine or 10. Where was your pain level?

And sometimes their pain level would be at around a five or six, but just sort of the anxiety surrounding how high the pain was going to get or like when it was going to end. Like it didn’t match. So sort of trying to be cognizant in that moment of like, okay, I’m feeling super anxious, but where where actually is my pain level right now? And then also being mindful that pain

Dr. Ginger Garner PT, DPT (25:39)

Mm-hmm.

Casey Berna, LCSWA (26:03)

comes in waves so that there’s often like a beginning and an end to it, like in the moment. So just also being mindful of that. So really doing a lot of mind-body work with folks, I think can help, particularly with chronic pain.

Dr. Ginger Garner PT, DPT (26:19)

Yeah, yeah, absolutely. And it can’t be, the impact of it just really can’t be, I think, overemphasized because it’s so easy for us to say as clinicians to take a deep breath and relax or something like that, which I know talking about this and being aware of it means that that’s not the kind of clinician that we are or practice, but.

It is too easy to say that. It’s too easy also to have that kind of self-talk, where you just say, all right, just relax, it’s not gonna be, it’s not gonna be fill in the blank or whatever. So I think that it’s important to give those tangible pieces to say, if you’re thinking about using or asking your therapist to try CBT or to try eye movement desensitization, which is EMDR,

which I don’t think we defined yet, so I’ll go back and define that. Then that’s your first step towards embodiment of really knowing how you’re feeling internally and how that matches how you interact with the external world. And of course, one of the first things in physio to talk about that mind-body combination is when we’re in pain for a long time, we kind of lose sight of where our bodies are in space, which…

we know as proprioception, as the geeky term for it. But if you lose the knowledge of where, let’s say your shoulders in space, then what happens is all of a sudden the pain becomes more diffuse. It begins to spread. We feel it in the elbow, we feel it in the neck, we feel it in the jaw, because our shoulders like, I don’t know where I am anymore, this hurts a lot, and so I’m out, we’re just gonna let, know, everything’s just gonna start to hurt.

And so when we take that first step to say, where’s my shoulder in space? Where is my jaw in space? I talk a lot about voice pelvic floor. Then we begin to understand, it actually is, it hurts here, right? Instead of it hurts here. So if you’re not watching on YouTube, what I just did was, we began to pinpoint the areas of pain again, which could be emotional, it could be physical, right?

So every mind-body exercise that you do, you begin to then appreciate exactly where the hurt is coming from, which helps you then to manage it in the best way possible, especially if we know that maybe that pain won’t entirely go away.

Casey Berna, LCSWA (28:56)

Yes, absolutely. And it’s almost sort of facing the pain, right? And really thinking about it and looking at it and seeing what it is and where it is. I think that can be scary and hard to do. And you mentioned the breathing. I can’t tell you how many times a patient will come in their first session. They’re like, just please don’t tell me to meditate. Please, like, please don’t tell me to deep breathe.

Dr. Ginger Garner PT, DPT (29:21)

Yeah, yeah. Exactly.

Casey Berna, LCSWA (29:26)

And I’m

like, yes, I mean, have di potentially diaphragmic endo, like breathing is hard for you or you you have severe ADHD, like meditating is not going to make you feel comfortable or even just sitting sometimes for folks with different pain or depending on like what your issue is like sitting to meditate can be hard for some. I think having

flexibility as a clinician and having different tools in your tool belt is also incredibly important. And really meeting the patient where they’re at is one of the hallmarks of social work. And I think that’s incredibly important when you’re working with folks with endometriosis.

Dr. Ginger Garner PT, DPT (30:11)

Yeah, that is so critical if you are looking for your, you’re building your team. So if you’re listening to this and you’re like, maybe I have endo or I have endo, you need a team. It is not going to be just, you know, if I was your pelvic PT or if Casey was your, you know, mental health therapist, it’s not one or the other because Casey, you pointed out something really important.

that’s kind of piggyback off of, can’t just tell people to breathe and relax, it’s worthless, is that your team should ask a copious amount of questions about your lifestyle. Like, do you have to sit all day? Okay, well then sitting meditation is not gonna cut it. Like, you need a walking mindfulness exercise, right? Like giving people the five, four, three, two, one. Five things you see, four things you hear.

three things you can touch, know, moving through the senses of that sensory experience. So if you have providers who are not asking you what your job is, what your education level is, how much time do you have to dedicate to a program or a plan, you know, your homework, right, that the therapist is going to give you? Do you have a support system in place? Because many people don’t. They don’t have jobs they like. They live in a food desert.

They don’t have a lot of great family support. People don’t really understand. Maybe it is socio-cultural. Understanding that a lot of cultures believe that women should do like a base level of suffering just because of who they are, religiously or whatever it is that they believe. That’s a lot to break through. So, you know, for everyone listening is like, if you’re building your, if you have Endo or think you have Endo,

You need that team and they need to be really, really invested in who you are and make sure that they customize whatever it is they’re doing to fit you.

Casey Berna, LCSWA (32:18)

Absolutely. And endometriosis is such a complex, far reaching disease. It touches really every aspect of life, physical, emotional, social, vocational. There’s a great book on medical trauma. It’s called Managing the Psychological Impact of Medical Trauma by Dr. Michelle Flom. And she talks about the different levels of medical trauma. And

Level two talks about folks with chronic illness and chronic disease, chronic pain, and how they are much more vulnerable to medical trauma. And one of the ways she says to reduce medical trauma is to have a multidisciplinary collaborative team who are on the same page, who understand what you’re going through and

can support you on every level. And I really think choosing providers, and that’s what I like to empower patients as well, is that it is an honor. And I say to them, it is an honor and a privilege to be on your team. It is an honor. And you get to choose who is on your team. And it is a place that is very special. And so feel.

Feel free to fire people who do not live up to your expectations. Keep searching for folks who are trauma-informed, who make you feel comfortable, validated, and who have knowledge or at least are open to gaining knowledge about what you are going through.

Dr. Ginger Garner PT, DPT (33:42)

Yeah.

Yeah, that cannot be overemphasized either. And I know we’ve probably each had unique experiences in that where a colleague, again, they may not actually be actively trying to gaslight you, but there is a certain level of ego check that always should be done. And I think that depending on what type of provider you are, some providers are less likely to do ego checks.

and they’re more likely to railroad you or bulldoze you, so to speak, and say, that’s not an endosymptom. If I could count the number of times that I had been given that advice, and I know you have probably heard patients with that or heard that a lot yourself, that systematically tears down your ability to trust yourself.

And that is, I don’t know, as a social worker, what are the most devastating things that happen to someone that is it losing trust in yourself, your ability to believe that you can make good decisions?

Casey Berna, LCSWA (35:08)

I think often when patients can’t get what they’re looking for, right? When they keep trying to talk to who should be trusted providers, right? And they’re getting dismissed, they’re getting invalidated. Then they really, it’s hard not to internalize that. And it’s hard not to start blaming yourself and believing what they’re saying. I…

I’m actually writing right now the chapter of my book and talking about medical narcissism, you know, and sort of like working with patients who say have parents who are narcissists, you see a similar thing in which they’re trying to bond with that parent and that parent is defensive, doesn’t know how to provide unconditional love support. So because that patient needs to bond with the parent,

when they’re little, they tend to blame themselves, right? Well, maybe I’m not good enough. Maybe I’m unlovable, all of that. Well, I really think that happens with patients and providers as well. When you have providers who are defensive, who gaslight, who are not supportive, who maybe even like use anger or shame or manipulation, blame a patient’s weight or their diet or that they’re not taking birth control or that…

Dr. Ginger Garner PT, DPT (36:09)

Hmm.

Yes. Yeah.

Casey Berna, LCSWA (36:32)

They won’t just get the hysterectomy, all of that. Patients then tend to internalize that. And that is one of the most devastating things you see. And then as a clinician, you have to hold space to that and gently try and reframe things and educate and support and validate in a way that you hope that they can heal and feel empowered again.

Dr. Ginger Garner PT, DPT (37:01)

my gosh, that’s gonna be amazing. That chapter alone will help so many people. mean, putting those two words together, because we do hear medical gaslighting, but you don’t often hear the medical narcissism come, that phrase come together, even though gaslighting and narcissism go hand in hand. From the mental health and the whole cluster B personality disorder perspective, you don’t often hear about…

or hear this discussed in a way that’s very specific to endometriosis. that, thank you for doing that. For all these women and people in advance to let them know that, yeah, you probably have lost trust in yourself, your sense of self-worth, a feeling like you have to push through and lean in and…

be like everyone else that may not have endometriosis that can hang with the same schedule and may not have that sense of severe fatigue that just hits them or pain that’s cyclical in some way and sometimes not related to cycles because oftentimes it does get erroneously attributed to only having a cycle too, which is another form of that gaslighting is when…

women are told, it’s gonna get better when you get pregnant or when you hit menopause. It’s like, nope. No, not true. So what are some of the therapeutic strategies, coping strategies, or how do you best identify it? I’ll leave that up to you. But in helping your patients’ clients manage the mental health aspects of endo.

Casey Berna, LCSWA (38:48)

Absolutely, I think again, holding space for everything they’re going through, validating their experiences, validating ways in which they have been dismissed, validating the pain they’re having, the symptoms they’re having, also helping to empower folks to again,

leave doctors who are abusing them, to find other providers who are worthy to be on their team, to join support groups, join communities in which they can see their experience in others so they don’t feel as isolated and alone, setting boundaries with family members who don’t understand, who won’t.

Try and understand who are also using shame or guilt to make you feel less than or to dismiss putting up boundaries to protect your own peace and protect your own mental health. Again, holding space for grief and just sort of mourning the loss of maybe a life you anticipated or thought you were going to have and then

rebuilding, reframing from a strength-based perspective on why you still hold value and knowing your physical limitations at the moment and your emotional capacity, what are ways you can find peace and joy and a life where you feel like you are thriving. And then also for endopatiens as well, just helping them through

the trauma of say surgery or, you know, trying different procedures or going through infertility, just sort of holding space for all of that as well.

Dr. Ginger Garner PT, DPT (40:47)

Yeah. So let me revisit one concept that you talked about because all of that would be done in the safe space of working with you or someone like you. And so one of the things that I hear a lot from patients and stories and of course, having navigated personal experiences is can you give an example, maybe from

you know, an anonymous or a kind of a conglomerate of cases and stories that you have experienced and heard and worked with of boundaries that you would set in the workplace or about your own, you know, Cause a lot of people, they lose their ability to, you know, their goals and dreams for having a family, their goals and dreams for their career, their goals and dreams for

even how they can interact over a holiday, you know, or what they can do, get dashed by the disease of endometriosis. And if you’re not trusting yourself and you’re feeling, well, less than, you’re feeling othered, what’s an example of some boundaries that people can set, that women can set, either with family members or with the workplace or even with themselves? Because I think we tend to be our own, you know, worst critics sometimes about

no, you can get out there and do that. You have enough energy to do that. Even if you’re in pain, you can do that. So just, yeah, talk to us a little bit more about the setting boundaries, because that seems to be so hard to do.

Casey Berna, LCSWA (42:23)

It can be incredibly hard to do. sometimes it feels like, especially with family, that sometimes family’s love feels conditional on our ability to be present or perform in ways, whether it’s showing up or doing things. So it can be really hard to put ourselves first, because it feels like we may lose our loved ones.

So usually what I have folks ask themselves is, this helpful or kind? And in terms of, okay, well, I feel like I need to do a million things today and I’m feeling really judgmental about myself, even though I’m bleeding horribly and I feel really nauseous, but I have to do X, Y, and Z just sort of to do a timeout and be like, okay.

Is this helpful or kind? Am I being helpful or kind to myself? And if the answer is no, just sort of take a minute, take a breath and be like, okay, well, why am I not being helpful or kind to myself? Like, would I say this to my best friend who was, you know, hemorrhaging and vomiting? Like, probably not. I’d be like, just relax. So just sort of trying to understand that. And then if a family member is, say,

Dr. Ginger Garner PT, DPT (43:24)

Mm.

Casey Berna, LCSWA (43:49)

you know, like you need to come to your cousin’s party. I can’t believe you’re thinking about missing it. Like, that’s terrible. Again, like, is that helpful or kind? Like, are they, is that family member thinking about my best interests? And again, the metaphor of like, if my house was on fire, would they be saying this to me? Like, I’m in physical crisis right now. Because again,

Endometriosis is a dynamic disease because you don’t feel sick 100 % of the time. Most likely, it’s an invisible disease. Often folks can’t tell by looking at it. sometimes it feels like it’s more easily dismissed, but it doesn’t mean it isn’t real. So just reprogramming ourselves to be like, okay, I’m in physical crisis right now.

Because I’m in physical crisis, that means I don’t have to do certain things. So just having a different perspective. And in terms of work, that’s so hard. I’ve worked with patients to change their career. Maybe they had a career where they’re on their feet all the time. So we sort of grieve that what they’ve always wanted to do isn’t aligning with how they feel. And so then opening up to, OK, what

would check your needs, even though it may not be what you want. you know, what are your values? What are your needs? And maybe we could agree if what you thought you needed and what you wanted and then come to a place of peace and trying to find something new that aligns with your body’s needs.

Dr. Ginger Garner PT, DPT (45:33)

Yeah, I love that. If the house on fire, that is a great takeaway. And that is it helpful or kind. Those are two really great pieces I think everybody can walk away with right now and begin to make more compassionate decisions for themselves. So we circle full back like to self-compassion, which we could spend our very brief lifetime on earth studying and

still have things to learn about it. But I think at the end of the day, that’s what you have to do with endometriosis is circle back to that. Am I being compassionate towards myself? Am I being gentle with myself? So thank you so much. Those are such helpful takeaways for anyone with, they think they have it or they have it.

There’s so much stress surrounding whether or not you need surgery. As we know, it can only be diagnosed with a biopsy, so you have to have a scope to do that. And we have no definitive ways right now of diagnosing with diagnostic tests or labs at all. And so there’s a lot of stress, a lot of expense.

that swirls around that, it almost feels like it’s medical tourism without any vacation at all. Just second mortgages and loans and things like that that have to get taken out because the insurance system still doesn’t recognize what actual treatment is. So I know that to hear these words, you and I are like preaching to the choir back and forth, but for everyone listening,

we get it, we understand those fears and the fatigue that goes along with that and some of the hopelessness and despair that can come along with that. so Casey, one of the things, one of the last questions really that I had was what are some of the resources that you have compiled? And if you’re listening to this in driving, just keep driving. You can look at the show notes later. Well, for all the links in the show notes.

and on the blog, on the website as well, but we will hyperlink those. But can you just kind of run through what some of the most helpful resources that you have come across are and where we can find you?

Casey Berna, LCSWA (48:05)

Absolutely. We already mentioned Shannon Cohn’s excellent film, Below the Belt. When folks are wondering how their partners, their spouses, their family members could get a glimpse into endometriosis and the hardships, I always recommend that film because it is really eye-opening and

Dr. Ginger Garner PT, DPT (48:11)

Yeah.

Casey Berna, LCSWA (48:30)

It is such a great vehicle for not only education about the disease and what patients have to go through and the systemic challenges, but you really are moved to feel so much empathy for the folks who are being highlighted. So I think that’s a really great resource for any clinicians who may be listening or for

folks who want to learn more about medical trauma. The book, Managing the Psychological Impact of Medical Trauma by Dr. Michelle Fowlm, that is excellent. I highly recommend that. It is a book that not only helped me as a clinician, but also helped me feel seen and heard as a patient as well. And she also went through medical trauma. My website has, CaseyBerna.com has a lot of resources in terms of

online communities that you can join. The link to Gynoqueer is there, the link to EndoBlack is there, also different Facebook communities like Nancy’s Nook, as well as some of my favorite websites that have great resources for endometriosis, like the Center for Endometriosis Care website. That’s all there, as well as the documentary that

we talked about on endotruths, the impact of endometriosis and infertility on mental health. That’s on YouTube. Anyone can sort of watch that. That’s another great tool to see yourself in other patients’ experiences and also share with family and friends to have them start to understand what’s going on.

Dr. Ginger Garner PT, DPT (50:18)

Awesome. Casey Berna, you are an incredible wealth of knowledge, of resources, of experiences. So I just want to thank you so much for the work that you do, but also for taking time to come on the show and talk with me today. Thank you so much.

Casey Berna, LCSWA (50:38)

goodness, it is absolutely my pleasure. It’s such an honor to be included in your incredible lineup this season and thank you for everything that you do to support patients and to educate. It’s so appreciated.